| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | It is amazing the comments people make. After 11 months of speech therapy and home practice, I can talk on the phone although I still elicit "what? what?". Still most people keep telling me "Oh, you sound great but that is EXACTLY what they said 9 months ago. When I questioned this, the response is that I am better now and this time they really mean it. Turns out they did not want to discourage me, but I wasn't being fooled anyway since part of my therapy is taping myself and playing it back. Long story, short moral: oral cancer doesn't make us stupid but people sure act like it does. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | wow, I have been under the weather the last few days after trying to use up some Jevity 1.2 before it expired which triggered massive gastric upset so I missed Christine's OCF blog entry about her parking lot encounter. Of all the posts here on this thread, I think that her story is the one that I hate the most. For those who did not read it, some jerk jeered at her appearance in an attempt to divert attention from his wife's banging the door of their car into Christine's in a parking lot. If she had shot him, if I were the local prosecutor, I'd waive charges on the basis of justifiable homicide. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Christine's story is shocking. It's difficult enough to go through surgery, chemo, rads, and related issues of OC. I found myself imagining what I would say if confronted in the same way. "I had cancer, what's your excuse?"
That might be a good strategy--imagine the worst comment and then come up with a powerful retort. Although, nasty people will never get it anyway. They are wired differently and derive pleasure by exerting cruelty on anyone who is not like them.
Christine, your fighting spirit will get you a long way! We all love you.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | I'm still seething about the parking-lot incident with Christine. He/"it" sounds like a miserable jerk and we can only hope he spends the rest of his life being miserable. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Some humans are just a waste of space...
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Some people just don't know what to say...sometimes they end up saying something horrible. In Christine's case...I just don't know. I'm sure when she was done with him he felt bad....
Angelia...from what I remember you have always dealt with rude people....it was you with the lady at work, right? I'm almost positive that was you:) I was ready to come to your work and tell that woman where to go!!! You be proud of only 15 left....that is a HUGE accomplishment
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Jan 2010 Posts: 13 Member | Member Joined: Jan 2010 Posts: 13 | I think this falls into this category - I found myself speechless at the time but of course thought of a good response driving home afterwards. At the pharmacy window dropping off 4 MORE scripts the other night, the clerk noticed that the scripts were from Siteman Cancer Center and asked me what type of cancer Mike has. Then, she said, "Is it bad?" After a blank stare and a few blink, blinks, I said, "yeah, its pretty bad." In hindsight, what I WISH I'd said was, "Oh no, its a GOOD KIND OF CANCER he has."
In Christine's case - I missed the post but I hope that guy felt bad afterward and hope he learned something.
Shelly
Caregiver/wife to Mike, age 48 used chewing tobacco - quit SCC BOT T2N3M0 Diagnosed Dec 29, 09 HPV+ L ND Jan 7 removed 31 nodes, 6 positive Bilat mets neck Siteman Cancer Center Port in Jan 27, Peg in Mar 3 IC 28 Jan & 18 Feb - TPF CRT Cisplatin x3 start March 10th
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Shelly..that is awful!!! You would think someone who works in a pharmacy would have just a tad of common sense..just a little..that's all we're asking for. If I were you I may even call and register a complait..lol That usually makes me feel better:)
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | I agree with Suzanne. Go to the top, Pharmacy Manager or similar Big Cheese, and give them the details. You deserve an apology at least!
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | I just read ChristineB's blog about the hideous behavior of that terrible old man - wish Christine had had a carload of OC survivors and he would have really gotten a lesson in decency which would have wiped that laugh off his face pronto - esp. if Charm, Eric, David, and a few others were riding with her! To reiterate what others have said: Christine, we love you!
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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